It can be very frightening if you have just been diagnosed. You have a wide variety of symptoms and no one seems to have a clear idea of how to manage them or how long they may go on for. Here are some handy hints and tips.
With M.E. there seems to be a window of about a year or so in which, if you adopt the right practice, you can make a complete recovery. Later on it becomes more difficult. The problem is that what you need to do can be very boring and also be contradicted by the demands or work, children etc. Here are my handy hints and tips:
- Do 80% of what you think you can do comfortably. Aim to feel as good at 6pm as you did when you woke up, or better. Leave yourself some margin for tomorrow.
- Think about “activity” rather than work or exercise. Everything you do is activity, even watching the TV, including walking, thinking etc. Some activities are more fatiguing than others and there is a mental/physical crossover. Walking can cause brain fog and thinking can cause physical fatigue.
- Aim for a level of activity and breaks that you can sustain, with a bit to spare, over a period of days and weeks, without crashing and ideally with feeling better each day than the day before.
- Cut each activity into chunks and rest between chunks. For example if I am doing a piece of work I do half an hour and then rest for 15mins and so on. After 5 half hour sessions I stop altogether. This may mean doing activities at strange times and will require some ingenuity.
- Do whatever you need to get enough sleep.
- Be aware that fatigue can be cumulative. You can have 4 good days and then crash. The effect of an activity may kick in up to 48 hours later. This is why I adopt the 80% rule.
- Boredom is your key enemy when pacing. Try meditating, listening to ambient music, looking mindlessly at nature, daydreaming. Don’t feel guilty about “doing nothing”. What you are doing is recovering.
- Duty is also your enemy. In my case I was just starting a business when I got ill and, although I could control my hours, I was very reluctant to let the business go. 30 years later I think I was wrong. I could have slowed down and saved my health. You do need to ask yourself some hard questions about your work, and negotiate with your partner. What you are obliged to do can be more than you CAN do. Pacing and resting can increase your capacity. But the price of pressing on may be much higher than you may think even if it appears to be the only possible course of action. If you had broken both legs there would be no question of trying to carry on as normal. Treat yourself similarly.
- Be very wary about “Push” . Push is when you are doing an activity and you begin to feel a bit off. The activity begins to feel a little more difficult. So you push yourself, which seems to be the mechanism for developing symptoms. So you get more symptoms. So you push a little harder. So you get………… Each time you go round this circle you seem to get more symptoms until you fall off a metaphorical cliff. You want to try to avoid this altogether. Stop before you begin to feel a bit off. You can have control over the condition. You do not have to be at the mercy of its ups and downs.
- If you keep crashing then adjust your pacing programme.
- Consider starting your pacing programme with days of complete rest. The first time I got M.E. I was due to go on a holiday in Greece. Thinking that I might as well be ill in the sun I went and lay on the beach for 14 days. M.E. gone. Unfortunately I didn’t learn from this.
- Depression can be a symptom of the condition or a reaction to it. If I woke up depressed I used to go far a brisk walk round the block for ten minutes, since brisk exercise tends to help normal depression. If I felt better I got on with the day. If I felt worse I went back to bed until the depression wore off.
- Beware of anyone who suggests that you should do a graded exercise programme gradually pushing through any discomfort and increasing your activity regardless of how you feel. This advice is based on the theory that you symptoms are mental rather than physical. I don’t believe this to be the case and neither to most health professionals and individuals who have actually had M.E. What I am suggesting here is a pacing programme. If you do an internet search for pacing programmes you will find out more.
WARNING. I am not a medical professional, just a person who has had M.E. for a long time. Check any advice you are given by anyone carefully.
Chris Smith August 2020